Drain and Final Pathology Worries! I'm a mess.

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Pooki
Pooki Member Posts: 27
edited October 2018 in Surgery - Before, During, and After

I had my lumpectomy and axillary lymph node dissection done on 10/3. On 10/15 I went back to my BS to have my post op check up the drain removed. They said everything looked good, but they can't take the drain out because my output is too high.

I have been consistently outputting 78-112 ccs of liquid in a 24 hour period now for a full week. Is that normal? When I left the hospital, I had significantly more liquid, but it was going down a little every day. Now I have just stopped here. I have a four hour flight on Saturday and had hoped that the drain could be removed tomorrow, but it isn't looking like that will happen.

I also received my final pathology report on Monday, and after they explained everything to me, when I got home I started looking through the report more carefully and discovered that the results didn't list any info about ER/PR/HER profile at all. They had a note referring to my first biopsy results that listed me as ER+/PR+/HER2-. They also did a Mammaprint on the biopsy sample, which I thought they needed to use a piece of the tumor for accurate results. It seems like they are just relying on the biopsy results for the hormone profile, which I am freaked out about because it's kind of key when determining my treatment. When I called and asked for clarification on this, they just kept referring me to the biopsy results as my final pathology for my hormone profile. This just doesn't seem right to me.

This is all so confusing and I feel like I have to chase down answers, after waiting 2 months to get to what I thought would be the final results. Has anyone else had this happen with their final pathology?




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  • Dmoore39
    Dmoore39 Member Posts: 18
    edited October 2018

    My final pathology also referred to the biopsy for hormone receptors too. I had the oncotype which confirmed the biopsy results. I know that so sometimes the oncotype may vary for some depending on percentage. So the ER may be lower (but still considered positive by IHC) but may Be negative according to oncotype. Not sure if mammaprint gives hormone receptors? Did you get ER percentage on your biopsy?

    And I'm sorry about the drains. They are really annoying. I had my drain on my prophylactic side for 3 weeks and 2 days. Drove me nuts and I was so sore and red. I just had to keep telling myself it's better than an infection.

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  • Pooki
    Pooki Member Posts: 27
    edited October 2018

    Thank you for your reply, Dmoore39! I haven't had the Oncotype done yet. The Mammaprint doesn't list the hormone receptors, but it did come back as Low Risk! On my biopsy, I was listed as ER+ (100%, strong intensity), PR+ (100%, strong intensity) and HER2 Negative 0.

    Yeah the drain has been annoying...My concern is more the consistent output of fluid that does not seem to be decreasing :( It also has a horrible odor.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2018

    The drain output should not have a bad odor. That can be a sign of infection. You need to notify your doctor of that.

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  • Dmoore39
    Dmoore39 Member Posts: 18
    edited October 2018

    Definitely get checked if there's an odor. I never had any odor and I've had drains three times. You should see a color progression from reddish like cranberry juice, to apple juice, then straw/lemonade color. That's a what they told me to look for and that's exactly what happened. Everyone is different on output but definitely if there's odor you should get checked. Congrats on the low risk. Rest easy with that info

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  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited October 2018

    I guess they don't automatically re-check the ER/PR/HER2 status during the final pathology. My final path report didn't show it either. But my MO said that she was going to request that it be re-checked to see if the results differ from the biopsy.

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  • DATNY
    DATNY Member Posts: 358
    edited October 2018

    I had drains for 3 full weeks. One of them stayed over 25 ml the entire time. The odor developed in the bottles too. I brought the concern to the surgeon, and I even offered him to smell the bottle, which he refused right up front :-) But eventually he agreed to do something about it, and that was to rinse he bottle with iodine solution (the brown disinfectant) , and leaving some inside the bottle. From then on, every time I would empty the bottles I would rinse it and then put some alcohol in them. In any case, you should discuss the odor with your surgeon.

    Finally, if you want your pathology rechecked you can also do that through an independent consultant. I worked with Jane Simpson (you can Google her) and she worked with the hospital to get new samples and with the insurance to get it covered.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2018

    If you received a Blueprint along with your Mammaprint result sheet it should show both your hormonal receptors and subtype (Luminal A, Luminal B, Her2+, Basal), but you can always request that receptor testing be run on your surgical sample. It is stored for a number of years in the pathology lab.

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  • Pooki
    Pooki Member Posts: 27
    edited October 2018

    Thank you, NotVeryBrave and Dmoore39! I am going to the BS today for a possible infection....Fingers crossed its nothing major!

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  • Pooki
    Pooki Member Posts: 27
    edited October 2018

    Thank you for your reply, BellasMomToo . After hearing so many people say that it wasn't included in their final path, and I am thinking maybe that is the norm when it comes to final path. I am going to ask them to run it to make sure it matches the biopsy findings!

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  • Pooki
    Pooki Member Posts: 27
    edited October 2018

    DATNY - Thank you for all the info! I laughed at asking the surgeon to smell the drain because I can see myself saying the same thing! I am going over to the BS this morning....Maybe they can give me antibiotics and clean the drain. I will definitely check out Jane Simpson! :)

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  • Pooki
    Pooki Member Posts: 27
    edited October 2018

    Hey SpecialK ! I did get the Mammaprint, which said Luminal A. That was based on the first biopsy, though, so I will definitely be asking them to run the hormone profile on the surgical sample to put my mind at ease. Thank you so much for your reply!

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  • Hawaiisurfer
    Hawaiisurfer Member Posts: 4
    edited October 2018

    Pooki, let us know what your Doctors say when you ask them to run the hormone profile on the surgical sample. Did they act like it was a big deal or routine? I had 4 biopsies but only the first one had the Hormone profile. So I want the others tested when I have my mastectomy on Monday. I didn’t think of it until I read your post and this profile. As for the drains, my PS said to limit movement because it increases the drainage (only walking)

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  • Pooki
    Pooki Member Posts: 27
    edited October 2018

    Hey Hawaiisurfer! When I asked the BS, she said that she would talk it over w/ the medical oncologist to see if we could do that. I was rather insistent on them doing it because I just want to put my mind at ease that we know what we are dealing with. I would definitely ask them to do it before the surgery so when you get your final pathology you have everything all at once. Good luck on Monday! I'll be sending positive vibes your way!

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